On January 18th 2013 our baby boy came screaming into this world and never stopped. Within the first 24 hours of Beckett’s life I, as his mom, knew something wasn’t right. My concerns were dismissed and we were sent home with our baby. The screaming continued and then the vomiting started. We tried everything to comfort Beckett while feeling like we had been lied to about the joys of parenthood. After months of vomiting, screaming for hours a day, sleeping for 20minutes to an hour at a time, countless appointments with our pediatrician, trying every formula on the market, antacids, and now head to toe severe eczema we found ourselves at yet another appointment to find out Beckett had lost 40 percentiles on the growth charts. He wasn’t growing and we had to do something fast before it effected his development. We were referred to several specialists and prescribed elemental formula for what was thought to be a severe milk allergy. As happy as we were to try yet another possible treatment we could have never been prepared for the cost of this treatment. My stomach sank when I went home and found that this formula would cost $40 for a small can. We just hoped that this would be temporary. Then, Beckett was tested for a condition called eosinophilic esophagitis. Eosinophilic esophagitis, or EOE, is a condition in which the esophagus attacks food as though it is a parasite. At 9 months old we were told Beckett had tested positive. What had been a difficult introduction to parenthood was now turning into a lifelong battle with an awful disease that would affect our child physically, emotionally and socially. We were heartbroken. At our first appointment with our EOE specialist we were told that we would need to stop feeding Beckett for 8 weeks. No solids, no table food, no snacks, no drinks. He was only allowed that oh so very expensive formula for 8 weeks. Because that elemental formula is the only known, guaranteed treatment for Beckett’s condition, the only way to heal his esophagus. I contacted our insurance company to see if, with an actual diagnosis, we could get coverage for this treatment. The answer was no. We decided to allow Beckett birthday cake on his first birthday and then eliminate food. I yet again contacted insurance, letting them know that this was now his only source of nutrition despite no longer being an infant. The answer was yet again no. Our specialist made a plea, sending in paperwork showing his diagnosis. It was denied. I was stunned. How could my medical insurance DENY treatment for my child.
At one point it was costing us $600 a month to provide nutrition alone for our child. That $600 did not even include other medical bills like procedures, office visits, and prescriptions. We fall into a group of people that do not qualify for any type of assistance but by no means are able to afford that type of monthly bill without it affecting us greatly. I am a registered nurse and my husband is a firefighter. We live modestly, we do not spend lavishly, and our number one financial priority is the health and well-being of our children. My husband took on three jobs in order to pay for Beckett’s medical food and allow us to save for potential financial blows that could occur with his condition. This is not a diet preference. This is not us choosing to feed our child in an expensive manner and asking someone else to pay for it. No one would choose this for their child. For eight weeks we didn’t eat in front of our child, we didn’t eat as a family, we took turns eating, often times in a closet. No one would choose this for their FAMILY. Beckett only has 10 foods he can eat. Imagine living off of ten foods. He didn’t get his Halloween candy, he may never have ice cream or eat a school lunch, or participate in a pizza party. He is orally delayed, he has had to be retrained how to chew and manipulate food. He has a significant speech delay, also stemming from the disease. He requires therapy multiple times a week and countless appointments and procedures. This is not a choice.
Beckett is now two, he is thriving in growth. He is not thriving because he can eat whatever he wants. He is not thriving because he has been cured. He is not thriving because there is a magic pill that will make this go away. He is not thriving because this is an easy disease to manage. He is thriving because of a medical formula and our dedication to his healthcare. I only wish his insurance company felt an obligation to assist in this ability to thrive.
Beckett is now two and still taking formula. There is a good possibility that because of his limited diet he will require it for the rest of his life. Eventually this financial burden will no longer be ours, but rather his. With one unified voice my hope is that you will all see the power that you have to lessen this financial burden for him and other children and families.